Health & Care Information Production Process Policy

Last Updated: 16 October 2026

Our Commitment to Trusted, Evidence-Based Information At Bruck Syndrome (Registered Charity No. 1216729), we believe that every individual, parent, carer, and healthcare professional affected by Bruck Syndrome deserves access to clear, accurate, accessible, and trustworthy health and care information. Because Bruck Syndrome is an ultra-rare congenital condition combining bone fragility and joint contractures, reliable guidance is vital for helping families navigate diagnosis, treatment, and daily life.

All of our educational guides, web pages, printable leaflets, webinars, and children's therapeutic resources are created using our formal 10-Step Health and Care Information Production Process, aligned with the Patient Information Forum (PIF) TICK UK quality mark for trusted health information.

Who Is Accountable for Our Information Quality?

• Designated Health Information Lead: Mr Mahdi Koutizadeh (Founder & Chair of Trustees) holds overall operational and governance accountability for the quality, accuracy, and accessibility of all health and care information we produce.

• Board of Trustees Oversight: Our Board of Trustees—Mr Mahdi Koutizadeh (Chair), Mrs Zahra Koutizadeh(Trustee & Designated Safeguarding Lead), Mr Farzad Kootyzadeh (Trustee), and Mrs Hadis Sharifian(Independent Trustee)—upholds our strategic commitment to PIF TICK standards and enforces a strict "Maker/Checker" dual-control sign-off so no resource is published without independent governance verification.

• Independent Scientific Advisory Committee (SAC): Every clinical or educational resource is reviewed and approved before publication by our independent Scientific Advisory Committee (SAC) or registered UK healthcare specialists (such as clinical geneticists, metabolic bone specialists, orthopaedic surgeons, and HCPC-registered specialist physiotherapists).

• Multidisciplinary Production Team: Our trained volunteer team brings together researchers and writers (Ms Nia Beth and Ms Soyinglo Shitiri), public health and partnership leads (Ms Muskan Abedin and Ms Madduri Priyanka), accessible graphic designers (Ms Sahaana Shankar and Ms Fatima Faisal), and digital accessibility and analytics management (Mr Kalyan Korapati).

Our 10-Step Information Production Process

1. Listening to Our Community (Identifying Need): Every new resource starts with a formal Proposal based on real questions raised via our Helpline, moderated Discord Support Group, community awareness events, family surveys, or clinical updates from our SAC.

2. Choosing the Right Formats: We produce information in formats that suit our community—including mobile-friendly web pages, downloadable A4 printer-friendly PDF guides to take to hospital or school appointments, subtitled webinars with full written transcripts, and illustrated therapeutic storybooks for children.

3. Up-to-Date, Trustworthy Evidence: Our writers use structured searches across approved medical databases and guidelines—including PubMed/MEDLINE, NICE, NHS England Rare Diseases Collaborative Networks, Orphanet, OMIM, ERN BOND, and Genetic Alliance UK. Full reference lists are logged and provided on our resources or upon request.

4. Expert Clinical Peer Review: At least one qualified, UK-registered healthcare professional or SAC member reviews every draft to verify clinical accuracy, safe handling precautions, and balanced risk-benefit descriptions.

5. Honest, Clear Risk & Uncertainty Communication: When explaining genetic inheritance (such as 1-in-4 [25%] autosomal recessive inheritance in FKBP10 and PLOD2 variants) or treatments like bisphosphonates and physiotherapy, we use clear numbers ("1 in 4" alongside "25%"), simple comparison tables, and visual aids. Because Bruck Syndrome is ultra-rare, we always explain clearly where scientific data is limited or still evolving.

6. Co-Design & User Testing with Families: People living with Bruck Syndrome, parents, carers, and healthcare professionals are involved throughout production and user-test every draft before publication to make sure it is clear, supportive, and practical.

7. Plain English, Health Literacy & Accessibility: We write our family guides to a target reading age of 9–11 years(and never higher than 11–14 years for complex genetic topics). Every medical term is explained in plain English and included in a "Words to Know" Glossary. Our designs use 12pt+ sans-serif fonts, high colour contrast (WCAG AA/AAA), alt text for images, and full captions/transcripts for videos.

8. Responsible & Transparent Use of AI: We never use Artificial Intelligence (AI) to generate unverified medical facts or references, and we never enter personal data into AI tools. Where approved AI tools are used strictly to assist with plain-English readability checks or outlining, every line is verified against primary clinical sources by our writers and signed off by our clinical experts, with a clear AI disclosure statement placed on the resource.

9. Editorial Independence & Zero Commercial Bias: All contributors declare any conflicts of interest in our Central Register. We maintain 100% editorial independence, never promote prescription-only medicines, and follow the ABPI Code of Practice.

10. Regular 3-Year Reviews & Version Control: Every published resource displays its Published: MM/YYYY and Next Review: MM/YYYY dates. Resources are reviewed at least every 2 to 3 years (or sooner if clinical guidelines change), and outdated versions are immediately withdrawn from circulation.